Tuesday, June 28, 2011

Getting back into the swing of things

I didn't mean to run so soon after getting my boot off, but the other day as I was walking around the lake with Maddie, my feet just started jogging. (Really!)

I went once around (a mile), with Maddie by my side, and then walked another mile. I felt fine, and I made sure to just walk the next couple of days.

On Sunday, I played two sets of doubles on a clay court with Donna, Deb and Korby, friends from my tennis team. The clay felt great under my feet, like playing on cushioning. The first set, I felt rusty, and Korby and I lost 6-1. I was happy to be out there, but I slipped into some "negative self-talk"...can't do this, can't do that.

"Hey, we're just out here having fun," Korby said.

And Donna reminded me, "Look at where you came from. We thought we'd never see you out here again."

Oh, right!

Either I warmed up or the reminders relaxed me or both, but the second set was fine. Korby and I brought it to a tie-breaker which we ended up losing 9-7, but obviously at that point it could have gone either way, and I had found my groove and started having fun.

It got hot, and by the end I was ready to stop and have a frozen lemonade. Actually, true confessions, I was dragging a little.

I summarized for Meryl this morning, partially in jest but partially serious, "I played hard and then the next day I thought I was dying of something."

She reminded me that age is a factor here too. Oh, right again! Sometimes I kind of forget about that.

Today I will probably just walk again and try to do some exercises. (Boring.) Tomorrow I might go to a tennis clinic with George.

Maddie has been enjoying her walks. She always goes for a swim, and we have been meeting all sorts of interesting dogs. The other day we came upon a young woman with a chihuahua puppy named Little Dog. Sometimes Maddie doesn't react well to little dogs, so I warned the owner and pulled back on the leash.

But Maddie usually just gets ornery when a small dog is aggressive and barks. This one seemed oblivious, so we let them say hello. Maddie was very polite, seeming to understand the need for gentleness with a creature that was not much bigger than her head. They lost interest in each other quickly; I'm not sure they even realized they were the same species.

Things have been falling into place here, the long days providing a sense of ease.

The other night, we were are own little version of domestic harmony.

Joe cooked on the grill, Katie weeded in the garden and sang, and I made salad and puttered around.

All was well.

Friday, June 24, 2011

Different ways to look at luck

When I went for my cleaning today, my dentist said, "You are one lucky woman."

He was referring once again to the fact that I have any teeth left at all after being immunosuppressed for so long. Instead, I have had to lose only four teeth.

Dr. Debian had started my dental drama when he told me months ago that four teeth were so decayed that they would need to be extracted. I was not very happy to hear this.

A short recap: I had two teeth extracted by a local dentist and then the remaining two removed by a dental surgeon at Brigham and Women's Hospital in Boston after it was determined that I would need a platelet transfusion before the procedure because my platelet count had dropped too low to ensure proper clotting. Both times, the dentists pulled the teeth just with Novocaine, although I did get a lot of help from a hefty dose (2 mg.) of Ativan.

It was after that second extraction that the dentist said he noticed a lesion that he wanted to biopsy for possible tongue cancer. The results came back inconclusive, and I was sent to a head and neck oncologist at Dana-Farber who ordered a throat scan and said she would need to remove the spot in a two-hour procedure under general anesthesia.

I was relieved when the throat scan came back negative for cancer, but I was not feeling especially lucky about the whole thing.

The May 31 surgery went well, and at my follow-up visit a week later, the surgeon, Dr. Laura Goguen, said that she had found severe dysplasia (pre-cancerous cells) over an area causing her to remove more of my tongue than she had expected. On "normal" people these type of cells could probably just be ignored, but on someone with a history like mine, they are more likely to turn cancerous.

By the way, the area is not really that large, but she took a noticeable scoop out from the side of my tongue.

She told me I was very lucky. "That was a good catch by the dentist."

My tongue hurt a lot, and it is still causing me enough pain that I haven't gotten off of the percocet. (Dr. Debian said today that because the area is so sensitive, it is likely to hurt for a while.)

Sometimes I look at the many people who have not been through the wringer, and I do not feel especially lucky at all.

But of course I know the many ways I am lucky, starting with the fact that I am alive to write this and that I am doing well and feeling good. And then there are all my many other blessings.

I guess it's all a matter of perspective.

Yes I am lucky to still have so many teeth, and yes I am lucky that they found the spot before it turned into cancer. And I am also lucky that at my cleaning today, nothing turned up to give me more trouble.

On my way out, the billing clerk said I owed nothing for the visit because my insurance covers cleanings but not fillings or anything else.

As I turned to leave, I said with a smile, "I guess I'm lucky that I have fewer teeth to get cavities in."

Tuesday, June 21, 2011

From tennis to television

I was asked to substitute in a doubles game yesterday morning, and I wouldn't have played two days in a row, but I couldn't resist.

I joined three women outdoors in Longmeadow for about an hour and a half of play – two sets of doubles  – and held my own and had a good time. They were all very good but fun and low-pressure, just right for me. It was a beautiful day, sunny with blue skies, and it was great to be playing outside.

Anonymous (who I wish would say his or her name) wrote after my last post that I am already over-doing it. Actually I am trying to keep in mind that, having just gotten out of the boot, I need to start back slowly. Of course "trying" is the operative word here. Yes, I do get carried away.

Yesterday afternoon Katie and I went to Northampton for an errand. Afterwards, we agreed it was too nice to go straight home, so I got a cappuccino and she got a mocha, and we walked around.

It was late afternoon when we got home and headed to the lake. I took Maddie for her walk, and Katie ran circles around me. A lot of people and dogs were out. I stopped and talked to a man with a tan and white puppy that I wanted to take home (the puppy, not the man.) Maddie also liked the dog, whose name was Rosie, and ran circles around her.

We continued on our way.Len Brouilette, the high school running couch, came running up behind us.

"Hi Maddie," he said as he passed.

Len often walks his dog, Simba, around the lake, and a lot of us say hi to the dogs rather than to the people.

A woman I know was also jogging, and we exchanged a couple of words while she passed.

Katie and I ended up together at the end. She had done three loops (a mile each) to my one, which was really a stroll and not exercise.

We walked home together and had a dinner of leftovers. Then we continued in our marathon viewing of the entire "Gilmore Girls" series. We had watched some seasons that she had received as birthday gifts; now we are on the fifth season, which we took out of the library.

Usually we watch one, maybe two episodes at a time. The odd thing is that, having watched the seventh and last season, we know how it turns out, but the characters are so well-drawn and the series is so well-written that it feels like you don't know what will happen.

(Are you laughing at me? No, it is not high-brow, but it is terrific.)

We each got a snack and settled in for an episode (about 40 minutes). It was very unsettling, (OK, romance-wise for Lorelai and Luke), so we agreed to watch another in hopes of a happier resolution...and of course we had to get another snack.

This one ended up even worse. What to do?

Katie wanted to watch another.

"But we're running out of food!" I said.

True confessions: It was late, but we went for a third, a record for us, accompanied by corn chips.

Things didn't turn out any better, but at least there were funny parts, and we went to bed tired but smiling.

Sunday, June 19, 2011

My stress fracture has healed

I am happy to report that I was released from the air cast on Friday.

The podiatrist (yes, Seinfeld fans, he is a doctor) said the bone on my foot healed very well, probably because it was strong from running and tennis.

Taking my first steps without the boot felt odd, but I adjusted quickly. Now I have to remember to start back slowly...not an easy thing for me to do. I don't think I'll run for a while; I'll just walk farther with Maddie and maybe throw in a few jogging steps every now and then.

I went to yoga yesterday, and today I hit for about an hour and a half with George, our coach. It's a beautiful day here, and we played outside on clay courts near the Connecticut River. It was so great just to be there.

George said I did very well. He said my arm seemed strong, which made me especially happy because it shows that my weight-lifting over the past month has paid off.

I felt good, except for getting winded after hitting a lot of balls. I had a fleeting crazy thought, as I often do when I get tired exercising. It goes something like this: "Oh no, I'm tired, maybe my red count is going down and maybe other things are too!" Then there is the correction: "No, you just hit a lot of tennis balls after being away for more than a month, and now pay attention or the next ball is going to go  flying by." Maybe it never ends. Sigh.

George plays a little game in which you can't progress to the next drill without hitting a certain number of balls in a row, depending on the date.

So, today being the 19th, I had to hit 19 forehands before we could work on backhand. Then 19 backhands and then 19 alternating.

I got into trouble on the backhands and kept hitting into the net somewhere around 10, 11 or 12.

"Four more tries, and if you don't make it you do 19 push-ups," he said with an impish smile.

Ha. That will be the day.

I got the 19 on the next try.

Thursday, June 16, 2011

Two of a kind

                                     Ellen and me on the steps of Kendall Hall 
                                     at Mount Holyoke College.

Turns out my friend Ellen O'Neil is in an air cast also. Ellen, Smith College's cross-country coach, is uncertain exactly what has been causing her pain; she thinks she aggravated an old ankle injury by running and will find out for sure tomorrow.

I also have an appointment tomorrow to gauge how well my stress fracture has healed. My foot has been feeling pretty good. My only concern is that after Ellen and I met on the steps of the gym yesterday and today, I walked with her a little farther than I have been going because I am getting antsy and because both days were nice. Now I am feeling a few twinges. I have remembered not to use the comfort of the cast as an excuse to overdo it; I hope I didn't blow it the past couple of days.

Anyway, we did have two nice walks, talking about a lot of different things other than our matching leg gear.

I'm still taking Percoset; without it my tongue still hurts too much. It is healing well, but as you can imagine, it is a sensitive area. I am taking less than I did immediately after the surgery a little more than two weeks ago, and I am no longer watching the clock to see when I can take more.

The day began and ended with sitting on steps.

Maddie has been shedding a lot and needs to be brushed frequently...or else you just end up vacuuming or sweeping her hair up off of the floor. The sun was just beginning to set when I finally got around to it today. I took my coffee outside and sat on the step in front of the back door with the dog in front of me. The grass looked extra green, the flowers bright. Maddie sat patiently, sniffing the crisp air and watching the cars go by. It was one of those small moments where everything seems right.

Plus, I sat down and got up without getting into any more trouble. It wasn't so long ago that once I got down, I needed help getting up.

Sunday, June 12, 2011

My day in court

Jim and I went to court Friday to modify our child support agreement, and while he gave some information to one clerk, I talked to another who was gathering other papers.

It was early at Hampshire Probate and Family Court in Northampton,

and we were the only customers. "My" clerk admired my purse. I told her where I got it (
Skera Gallery in Northampton), and she said she got hers at a similar store. We both agreed we loved these little works of art that are always a conversation piece and are a style called Great Bags made by Maple Leather Company.

No, I have not mistakenly set out to write a post hawking purses. So you might wonder why I am talking about my purse.
Because I've been to that courthouse with Jim too many times to count, and not all have been under circumstances so relaxing that I can chat with a clerk about my purse.

The first time, we went before a judge to file our divorce papers in 1997. There have been modifications since then, and sometimes we were so angry that talked through our lawyers and could barely look at each other.

Friday's was a routine visit to decrease support upon Joe's graduation from college. I wasn't  happy about it, but I wasn't emotional. We simply arranged a time when we could both go, and Jim wrote in an e-mail that it was his turn to buy the coffee and muffins afterward.

We didn't know what the exact amount would be; although we could have done the math, we asked the clerk to run the pertinent figures (mainly income and number of children) through the Child Support Guidelines.

Then we waited for the information to print out.

He thought it was going to be lower.

I thought it was going to be higher.

But as we've heard before, plain and simple, "The guidelines are the guidelines."

I sighed.

"I'm going to have to buy less cereal for the children," I said.

"I'll be able to buy more gas for my car," he replied.

With that, we went to Esselon for coffee and blueberry scones.

We've been in a calm period for a long time. We still have two major things in common: the kids, of course, first, and newspapers, second. 

I'm a freelance writer and therefore not directly involved in daily journalism anymore, but I can talk about it for hours. (I've been gone from the Sunday Republican for years, but when I talk to friends who work at the paper, I still say "We," as in "We need to do such and such.)

 Jim – and Ben – both still work for papers, and I can talk shop with them for hours about certain papers in particular and the business in general.

So Jim and I talked in a relaxed and comfortable manner. During these times you remember that the qualities that drew you together – and that kept you together for years – never really go away, and you're lucky to plug back into them. Of course you divorce for a reason, and so you unavoidably remember why you hated your former spouse, but this doesn't happen all the time.

Jim, who lives in Connecticut, slept on our den couch Thursday so that the drive to the courthouse in Northampton would be shorter Friday and so we could go together. He got here after work and watched TV in the den with Katie and Joe. Katie sat next to him on the couch, looking happy as a clam (whatever that means.) Maddie, having been displaced from her normal spot on the couch, didn't look as happy, but she wanted to be in there. Joe was in good form. I wandered in and out. It was all very lively.

When I came downstairs in the morning, Jim had made a pot of coffee.

Thursday, June 9, 2011

Goodbye Dori

The Internet provides immediate closeness to people with this terrible disease. You don't have to get to a support group or plan meetings. Click and you have found a new kindred spirit.

That's the way it was with Dori Brown, who died Tuesday of AML, the same kind of leukemia that I had. We never met or even talked, but thanks to the words of husband Jim on his blog Run for Dori, I felt like I knew her. I also felt like a knew Jim. He is a runner who participated in races benefiting the Leukemia and Lymphoma Society and other organizations seeking a cure for blood cancers, and he drew attention to the need for more people to become bone marrow donors.

He chronicled in words and pictures Dori's four-year battle with leukemia, letting us into their life as parents to two children, writing about the effects on the kids, and as an extra benefit to runners, taking us with him on his runs on the good days and the bad days and speaking candidly about how they helped him, or didn't, depending on the day. He gave a full picture of a family going through the leukemia journey.

Dori's smile was always with us, most often in photos showing her having fun with her family. Jim's writing was expressive yet never excessive, realistic and informative and showed how this couple navigated the ups and downs with grace.

I loved it when he wrote after she came home from the hospital for the last time that she was the most beautiful cancer patient he had ever seen. She seemed tremendously warm and loving, like someone who  really enjoyed and appreciated life. And without ever being maudlin, Jim wrote about how much he loved her. You could also see how much her kids, Will and Kathryn, loved her, and you could see how they have the strength to be OK.

I really thought Dori was going to make it. When I saw Jim's latest headline, "Rest in Peace," I was floored. And there was Dori's smiling face. I'll miss her, and him too. It would be understandable if he signed off from the blog, but I hope he continues writing for a while so that his big support group can keep in touch.

Tuesday, June 7, 2011

Percocet chronicles, tongue update

As I sit here at the kitchen table, I just fell asleep with a bite of coffee cake in my mouth and my fork in my hand. It's because I took 10 mg. of percocet this morning; without it, my tongue hurts so much that I can't eat or even hardly think. It makes me loopy, so I hope this makes sense.

I had to choose between lying down and forging ahead with my plan to write. I made more coffee and decided to write.

I didn't want to take percocet near bed-time last night because the other night I had hallucinations that large objects were coming at me from all directions. I even thought that large objects were filling my room and crowding me on the bed.

I tried two Tylenol alone at bed the other night, but that didn't take the edge off the pain, and I couldn't sleep that way either. Last night I took 10 mg. of percocet a couple of hours before bed and followed with half an Ativan, hoping it would undercut the weirdness of the percocet. It worked. Oh, and I also took a Benadryl to try to stop the itching from my rash. More on the rash in a minute. (Bet you can't wait!) Anyway, I got pretty zonked out.

On Monday, Joe drove me to Dana-Farber so I could see Dr. Goguen, who did my tongue surgery, and so I could get bloodwork and check in with Melissa.

Dr. Goguen said my tongue looks the way it should and said the biopsy report was good. She had removed more than she had expected because of a large area with severe dysplasia. She got clean margins but left a little spot of mild dysplasia in order to avoid digging deeper. Apparently mild dysplasia is unlikely to do any harm.

The pain could persist for a couple of weeks. I guess the tongue is a particularly sensitive area.

I had gotten bloodwork before that appointment, so when I went down to see Melissa, she had my counts. They were fine for me: platelets, 74; white blood count, 9.6;  hemoglobin, 10.2, and hematocrit, 29.8. I did wonder why my hematocrit (and hemoglobin) had dropped; the last few times it was in the low 30s and close to normal, which is 34.8-43.6. (For hemoglobin normal is 11.9-15.0.)

She said it really wasn't a significant drop, but she would double-check with Dr. Alyea if I wanted. My liver is stable, but she said it wasn't a good time to lower the prednisone. She promised to check with Dr. Alyea on that also.

So, back to the rash. My torso and face have an interesting collection of spots and blotches; discreet red spots on my face, the splotches of red on my arms from the prednisone, now joined by smaller dots; a genuine rash on my stomach and something around my ankles. Definitely not beauty-pageant material, although possibly interesting to a pointillist exploring use of different kinds of dots.

When I first noticed the new tiny spots a couple of days ago, I panicked and thought they were petechiae, a possible sign of low platelets. I thought I needed a transfusion. Petechiae are a trigger for me, a sign of all things going downhill. My mind did its crazy doom and gloom thing.

I called Dr. Alyea and he said it wouldn't hurt to get a blood test and meet with Melissa. (We talked on Sunday, the day before my appointment with Dr. Goguen.) I asked if we should plan in a possible transfusion, and he said he doubted that would be needed.

Then we talked about the Federer-Djokovic match at the French Open, which took my mind off everything as I watched it on the couch Friday. Federer won the semi-final 7-6, 6-3, 3-6, 7-6, but lost in the finals Sunday to Rafael Nadal, 7-5, 7-6, 5-7, 6-1. I watched that one too.

The more I studied my dots, the more I realized that they were all part of a rash. I was delighted when I discovered that they itched (not a quality of petechiae). Now the itching is getting old.

Dr. Goguen took me off the antibiotic, clindamycin, although it does not usually cause rashes. It might be the percocet, but I'd rather itch than ache. It will probably end up being one of those "rashes with unknown origin." As for my face, which has a different kind of larger red dot that does not itch, I will probably schlepp back into Boston to see my dermatologist, Dr. Linn.

Well, I have to go now and take more percocet. Maybe a Benadryl is in order too.

Friday, June 3, 2011

Another saga

This is the first time in days that I've felt like writing, and even though I feel better, it still hurts to talk.

My tongue surgery Tuesday went well, and I felt a little out of it, but mostly OK on Wednesday. Yesterday, I woke up vomiting and with a terrible headache and pain in my very swollen tongue. My throat also hurt; the doctor had inserted a scope to look around (she told Diane that everything looked fine.)

I figured out that the vomiting came from the anesthesia and the Percoset (Oxycodone plus Tyelenol, well actually Roxicet, the liquid form). I went to the high end of the dosing – never above – but it was probably too much to take on an empty stomach. I couldn't keep even a sip of water down, so I checked with Melissa and she said that I was probably dehydrated and should go to the ER. Joe got ready to take me.

Joe said that since he frequently takes me to the hospital right after he gets home, I'm probably allergic to him and should in the future take an allergy pill. At least he got me to laugh when we were leaving the house.

We waited in the ER at Baystate Medical Center for about two hours when I finally got taken in and began getting the first two bags of IV fluids. Joe then had to leave, and Katie took over. I got Morphine for the pain intravenously plus Zofran for nausea. They said to make sure I kept drinking when I got home, which ended up being around 9:30 p.m.

Then I started to itch. I remembered that as a reaction to Morphine, so I took an allergy pill. By 11 p.m., I was happily watching The Daily Show.

But when I woke up this morning, I felt like I had been hit by the proverbial Mac Truck. My heart was racing, and I was in a lot of pain. I used my handy blood pressure cuff to take my bp: It was 144/94 – high. I took 50 mg. of Atenelol, my usual dose of bp medicine, and drifted back to sleep. When I checked again, I felt lightheaded, and here is why: It was low, at 89/62.

I asked Joe to put on water for coffee, got a drink, and called Melissa. She said it made sense to have taken my usual amount of Atenelol, but because I hadn't taken any for two days, my body was probably hyper-sensitive to it, and that tomorrow I should take half.

She also said to take the anti-nausea medication an hour before the Percoset and to drink plenty of water and try to eat a little something. That worked well.

There were, as there are for many things, several bright spots.

The first, as all of who have dealt with cancer always notice, is the fact that it had nothing to do with leukemia. Well, the tongue dysplasia was a byproduct of having my immune system manipulated so often, but once I got over the initial concern, I realized that it's nothing major.

Second, the kids were great.

Third, the Boston stay began in a festive mood with a lovely cookout at Margaret's for her birthday, out on the deck overlooking their big lawn and gardens surrounded by woods. The peach pie was out of this world.

And last was a small act of medical kindness on the part of the young anesthesiologist who prepped me for the surgery. Instead of sticking an IV in directly as most do, he gave me a tiny injection of numbing medicine before putting in the IV. Wow. Did that make a difference. I thanked him and told him that I don't usually get IVs that way. And he said something that makes sense. "The IV is really the only part of surgery that you remember, so it might as well be a good memory."

And it was true. As they wheeled me out, they inserted a dose of "happy medicine," and I don't remember anything after that.

Obviously it is not time-effective (or, I'm sure, cost-effective) to give that little bit of extra anesthesia all the time before putting in an IV. Most slip in without too much trouble, but with quite a few, they have to nudge it around before hitting the right spot, or, even worse, they miss the vein and have to stick you again.

So, I have survived. Today I never left the house. I made stewed fruit that reminded me of the days after transplant when I couldn't eat fresh fruit. My mother used to make it for me. Katie says she likes it too: another bright spot.